Avatar of Kirsty


July 31, 2010 in Uncategorized

Ok, so I'm going back on the diet in just over a week and I am really worried about it. I've not been on the diet for a few years and I don't know how well I am going to cope with having to restrict everything again. I'm so used to going to KFC or having a Mars Bar when I want one...it's going to be hard. I also really hated the foods available for PKU, I soooooo hope they have improved in the last few years!! I am also really worried my PKU has affected my son. He is showing signs on behavioural problems but my GP won't take any notice of me and thinks it's just "normal 3 year old behaviour" as he has no knowledge of PKU, but I have worked as a nursery nurse in nurseries and my son is far from the same as other 3 year olds. I think that because I struggled with the diet when I was pregnant and some of my levels were high, that I have caused him some damage. I don't know what to do, I'm going to have to try and see if the new consultant at the hospital will assess him because I'm really worried.

6 Reviews of Worried

  1. Registered: Jul 22, 2009

    Posts: 0

    Fairhaven, Massachusetts

    Can the local school system evaluate him at this age? Sometimes, schools can evaluate children who are not old enough because they need services. Try the local Special Education Department of your local school system. I don;t think you are in the US but there are similar programs.

    Can you take your son to your PKU clinic? They might better evaluate him also.

    Good luck with going back to the diet. I think even just one change here and there helps. I know I can’t stick to a diet so I know my son won’t always stick to his. But, I tell him that if he makes one good choice a day, it will make his day better.

    I hope you feel some results. I think that would help you.

    Take care,


  2. Registered: Jul 7, 2010

    Posts: 0


    Im hoping that once he starts pre-school in September someone somewhere will help. I am taking him along to the clinic with me when I go. My old dietician has left, which I am grateful for because she treated me like I was about 5 and it infuriated me. Although he doesn’t have PKU himself (thank God) I’m not sure what they will do for me…

    Thanks Stephanie

  3. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    I am sure your clinic can give you advice where to get services or evaluations for your son if they cannot. Keep fighting for your child. Don’t just give in to what the GP is saying. Too often doctors do not realize how important PKU diet is and what can happen if it is not followed. I would also suggest writing down things your son is doing that you feel is not typical for his age. This written documentation will be helpful for specialists treating him. In the meantime, for getting back on diet.. make small goals and increase them over time. Don’t be hard on yourself. PKU diet is tough just like any person going on a diet. There are a lot of improvements in PKU foods. Checkout recipes on Cambrooke Foods. I have some cookbooks that are great too. If you want the names of them, shoot me an e-mail at katiemag16@aol.com

  4. Registered: Jun 27, 2009

    Posts: 0

    , New York

    Do you live in the US – If so, you can get a full developmental evaluation through CPSE (Committee of Preschool Special Education) for free. Trust your gut if you think there are delays and try to get help now – it can make a huge difference (I used to work in Early Intervention). As for worrying that your struggles on diet caused some potential problems – it does no good. You did the best you could and you need to move forward. When Molly was diagnosed with PKU, I felt a tremendous amount of guilt that it was something I passed on to her. I realized that I could not change the past and just needed to do everything in my power to make her future as bright as possible.

    There have been lots of improvements in food and formula since Molly was diagnosed (10 years). Cambrooke is wonderful as is Taste Connections. There are lots of recipes on both sites. Virginia Schuett has a wonderful cookbook Apples to Zucchinis that uses a lot of foos bought at a grocery store. I also launched a low protein culinary website called Cook for Love that has lots of recipes and a few online video demonstrations. It is a non-for-profit and there are no fees.

    Good luck!

  5. Registered: Jul 7, 2010

    Posts: 0


    Hi, thanks everyone.

    I live in the UK so I think the system is a little different over here. I will fight to get him the help he needs and my first stop will be on Tuesday at the clinic.
    I’m going to ask about KUVAN as that is something that wasn’t around when I was last on the diet. I was on Phlexy-10 at the time.
    I know it’s going to take time to get used to the diet again and re-learning to weigh out foods before they can be eaten. It’s for the greater good of my health and better to do it now whilst I’m still young than wait a few years and possible problems could have set in by then.

    Thanks again


  6. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Kuvan is not in place of formula or phlexy-10 pills. Kuvan is a drug that can lower your PHE levels. I am sure your clinic will provide you with information on it. If you need more information about the Kuvan, I’ve been on it for almost three years. I would be happy to let you know more about it!

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